Wednesday, 19 September 2012

ME / CFS Research Newcastle

ME / CFS Research Newcastle has created a page on Facebook, which you can follow here:



They have today posted a summary of the study they have proposed to the ethics committee. It is thus:

Chronic fatigue syndrome (CFS) occurs in 0.2-0.4% of the population and currently its cause is unclear. Abnormality of the autonomic nervous system is recognised in 3/4 of CFS sufferers and we believe that it underpins many of the symptoms that are characteristic of CFS. Autonomic nervous system dysfunction is characterised by symptoms of dizziness on standing, symptoms present in nearly 90% of people with CFS. Despite this, why autonomic dysfunction occurs in people with CFS is not understood and as a result treatments limited. This study will explore what leads to autonomic dysfunction in CFS particularly whether it occurs because of abnormalities in centres in the brain that control the autonomic nervous system, or, due to a peripheral volume or vascular problem. In non CFS diseases, autonomic dysfunction has also been shown to be associated with memory and concentration problems (cognitive impairment). Over 80% of those with CFS describe problems with memory and concentration, so this study will also explore whether there is a relationship between autonomic dysfunction and cognitive problems.

The programme has two phases:
1) we will use new ground breaking brain magnetic resonance scans that will allow us to study brain function in CFS and how this relates to problems of blood pressure control (autonomic nervous system) and memory and concentration (cognitive function).
2) we will explore whether cardiac or blood vessel function might contribute to autonomic dysfunction in CFS.

As it happens, I was going to speak to my doctor tomorrow about the problems I have when I stand up, so was interested to see that this is part of the proposal. (It also told me that there is no treatment for it, so little point in my discussing it with my doctor after all). I did actually think that it was already established that cardiac or blood vessel function contributed to autonomic dysfunction; it's listed in the International Consensus Criteria for M.E. as 'Orthostatic Intolerance'. So I shall look forward to seeing the results on this.

I will also be very interested to see what the study shows regarding concentration and memory.

Newcastle may be a long way from me, but I do wish I could volunteer for the study.

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